Corporal Michael J. Crescenz VA Medical Center, Philadelphia, PA, United States.
Department of Dermatology, University of Pennsylvania, Philadelphia, PA, United States.
Front Immunol. 2019 Nov 6;10:2571. doi: 10.3389/fimmu.2019.02571. eCollection 2019.
Pemphigus, an autoimmune blistering disease that affects the skin and mucous membranes, adversely impacts patients' quality of life (QOL). While there are various QOL measurement tools that can be used in this disease, few studies have assessed how a patient's change in disease severity can affect their QOL. This study aims to identify which disease severity index correlates best with the change in QOL. Fifty pemphigus patients completed QOL surveys with disease severity scored over two visits. QOL was assessed with the Autoimmune Bullous Disease Quality of Life (ABQOL), Dermatology Life Quality Index (DLQI), Skindex-29, and Short Form Survey 36 (SF-36). Disease severity was scored with the Pemphigus Disease Area Index (PDAI) and Autoimmune Bullous Skin Disorder Intensity Score (ABSIS). Correlations between the change in QOL scores and change in disease severity were analyzed using Spearman's coefficient (). The change in PDAI showed a strong correlation ( = 0.60-0.79) with changes in the ABQOL, Skindex-29 symptoms (Skindex-S), and Skindex-29 functioning (Skindex-F) subscales for all patients ( = 50). For patients with mucosal disease ( = 24), the change in PDAI showed a strong correlation with changes in the ABQOL and Skindex-S subscale. For patients without mucosal disease, the change in PDAI showed a strong correlation with the Skindex-S. The change in ABSIS showed a strong correlation with Skindex-S for all patients and patients with no mucosal involvement, but showed no strong correlations for patients with mucosal involvement. The changes in PDAI always had a stronger correlation than the changes in ABSIS scores to changes in the ABQOL, DLQI, and Skindex-29 subscales, except where the PDAI and ABSIS scores were about the same for the Skindex-S subscale in patients with no mucosal involvement ( = 0.76 and = 0.77, respectively). PDAI is superior to ABSIS in its correlation with validated QOL tools. The QOL tools that appear to be of most use in clinical trials and patient management are the Skindex-S and ABQOL.
天疱疮是一种影响皮肤和黏膜的自身免疫性水疱病，会对患者的生活质量（QOL）产生不利影响。虽然有许多可用于该病的 QOL 测量工具，但很少有研究评估患者疾病严重程度的变化如何影响其 QOL。本研究旨在确定哪种疾病严重程度指数与 QOL 的变化相关性最佳。50 名天疱疮患者在两次就诊时完成了 QOL 调查和疾病严重程度评分。使用自身免疫性大疱性疾病生活质量量表（ABQOL）、皮肤病生活质量指数（DLQI）、Skindex-29 和简化健康调查 36 量表（SF-36）评估 QOL。使用天疱疮疾病面积指数（PDAI）和自身免疫性大疱性皮肤障碍严重程度评分（ABSIS）对疾病严重程度进行评分。使用 Spearman 系数（）分析 QOL 评分变化与疾病严重程度变化之间的相关性。对于所有患者（n=50），PDAI 的变化与 ABQOL、Skindex-29 症状（Skindex-S）和 Skindex-29 功能（Skindex-F）子量表的变化呈强相关性（=0.60-0.79）。对于有黏膜疾病的患者（n=24），PDAI 的变化与 ABQOL 和 Skindex-S 子量表的变化呈强相关性。对于没有黏膜疾病的患者，PDAI 的变化与 Skindex-S 呈强相关性。对于所有患者和无黏膜受累的患者，ABSIS 的变化与 Skindex-S 呈强相关性，但对于有黏膜受累的患者，ABSIS 的变化与 Skindex-S 无强相关性。除了在无黏膜受累患者的 Skindex-S 子量表中 PDAI 和 ABSIS 评分相近的情况下（分别为=0.76 和=0.77），PDAI 的变化与 ABQOL、DLQI 和 Skindex-29 子量表的变化相关性始终强于 ABSIS 评分的变化。与验证过的 QOL 工具相比，PDAI 与 QOL 工具的相关性更强。在临床试验和患者管理中似乎最有用的 QOL 工具是 Skindex-S 和 ABQOL。
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